Intubated Women, Catholic Health Care and What it Means to be Alive

Last night I was a panelist at “The Gender & Sexual Politics of End of Life Care,” an event hosted by NYU’s The Center for the Study of Gender and Sexuality, along with Amber Hollibaugh, Susan Gerbino and Ai-jen Poo, brilliant women doing phenomenal work in the areas of LGBT rights, palliative care and domestic workers’ rights. Below is the (rather rough) text of my talk, which addresses Catholic hospitals and the use of feeding tubes.

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Thank you, Ann Pellegrini and Robert Campbell, for including me in this amazing group of women.

I’m going to read from a paper that I’m working on about the use of feeding tubes in prisons and hospitals in the U.S. The paper will become part of a larger project a book on how Americans die, thanks in part to a Knight Luce Grant for Reporting on Religion and American Public Life from the USC School for Journalism and Communication.

I have a correspondence with a prisoner in Connecticut who, to contest his conviction, stopped eating 4 years, 7 months and 27 days ago. He survives on liquids. When he stops drinking, the prison straps him down at four points and forces a polyurethane tube down his nose, and into his stomach and force feeds him. They’ve done this 12 times in the last few years. He and the Connecticut ACLU sued the state to stop the forced feedings and last month the state Supreme Court decided against them. I bet you haven’t heard about Bill Coleman but his case is a perfect foil for the use of feeding tubes in hospitals and will allow us to back our way into the issue of gender and feeding tubes.

First I want to describe for us the current landscape of health care delivery. There are 629 Catholic hospitals in the U.S. which manage about 1/5 of all hospital beds. (In 2005 there were 573. +56) If you thought during the Obamacare (Affordable Care Act) debate or the contraception debate in February — Why does the Catholic Church play such a large role in health care policy?–this (number of hospitals) is your short answer.

The hospitals are run by directors who are answerable to their local bishop. Those bishops are answerable to the United States Conference of Catholic Bishops (USCCB), now headed by Cardinal Timothy Dolan (who was on the phone with President Obama curing the contraception debate). All told, close to 25% of us are treated in Catholic hospitals each year.

Which is fantastic. The Catholic Church sees health care delivery as part of their mission. They practically invented the modern hospital. And they’re good at what they do. But as we know from reproductive rights issues, Catholic leadership has a different idea of what health care is than the majority of the public (including Catholics) and from common medical practice. The USCCB, to varying degree, governs all Catholic facilities according to 72 guidelines, The Ethical and Religious Directives. A webwork of conscience clauses makes Catholic entities exempt from state and federal laws. Even when serving a public (and laity) that does not agree.

It’s important to note that Catholic hospitals are non-profit and are budgeted just like other non-profit hospitals: they receive less than 3% of their funds from Catholic sources. 50% of their funding comes from the state and federal government.

Lastly, we’re in a perfect storm of factors that are contributing to a legal, social, economic and ethical crises in health care. You’re aware of most of these factors but one that particularly pertains to feeding tubes is this: the definition of death changed in the 1970s, perhaps for the first time in human history. Death used to mean the almost simultaneous end of heart beat, breathing and brain function. But with the advent of respirators and defibrillators, which can sustain breathing and heart beat indefinitely, the definition of death has medically come to mean the end of brain function. The question our society is now grappling with is how much brain function makes you alive? What do your loved ones think alive means? What do you think alive means? In three feeding tube cases within the past 33 years, all involving young women, the definition of death–or life–has become a highly gendered and, I’ll suggest, sexualized issue.

** Paper excerpt

There are two places in America today where a person does not have the right to stop eating: prison and a Catholic hospital. Two court cases have been cited in legal proceedings regarding the force feeding of prisoners. The 1990 Cruzan v. Director, Missouri Department of Health ruled that “the Constitution gave a competent individual the right to refuse lifesaving medical treatment”[1] but that guardians requesting removal of feeding tubes had to prove that it was in keeping with the patient’s wishes. The Cruzan case involved a young woman, Nancy Cruzan, who had been in a car accident and was in a persistent vegetative state after paramedics resuscitated her. Four years after the accident, her husband and family asked for her feeding tube to be removed. The case upheld an 1891 Supreme Court decision by reiterating the “sanctity of self-determination” and, “the right of every individual to the possession and control of his own person.”

The second case cited in law suits regarding the force feeding of prisoners is Washington v. Glucksburg which was argued before the Supreme Court in 1997 (by a tough little woman named Kathryn Tucker whom I’ve interviewed). Doctors, patients and Compassion in Dying (now Compassion & Choices, an aid in dying (also called assisted suicide, right to die, euthanasia) advocacy group) argued that individuals should have the right to aid in dying. The court didn’t agree but took the opportunity in their ruling to restate right to die jurisprudence:

The right assumed in Cruzan…was not simply deduced from abstract concepts of personal autonomy. Given the common-law rule that forced medication was a battery, and the long legal tradition of protecting the decision to refuse unwanted medical treatment, our assumption was entirely consistent with this Nation’s history and constitutional traditions.[2]

March 31st–10 days ago–was the seventh anniversary of Terri Schiavo’s death. Like Nancy Cruzan, she was in a persistent vegetative state and controversy arose over removing her from a feeding tube. Schiavo’s parents, Robert (who died in August, 2009) and Mary Schindler, and her siblings, Bobby and Suzanne, all devout Catholics, claimed her death was a “court ordered murder.” According to the Schinders, Schiavo was not terminal but mentally disabled. Her feeding tube provided basic comfort care. Her husband, Michael, they asserted, wanted his wife out of the picture so he would inherit a large trust ($800,000 won in a negligence case against Schiavo’s doctors) and so he could marry his live-in lover. Michael Schiavo contends that a few years after his wife’s collapse he accepted that her condition was permanent and that keeping her body alive on a feeding tube was cruel.

Terri Schiavo had collapsed in her home in 1990 but was resuscitated by an emergency crew. In the hospital she was put on a respirator, which she was eventually weened from, and on a feeding tube. Michael Schiavo, his wife’s primary guardian, petitioned the courts three times, the first in 1998, to end her intubation. Each time he won but the case was appealed by the Schindlers. The family, desperate to prevent tube removal, rallied legislators (including Rick Santorum of Pennsylvania and Jeb Bush of Florida), Catholic bishops, and “pro-life” activists (including Randall Terry who became their spokesman) to reach out to the media. The resulting news frenzy captured the public’s attention but not its support. Finally President George W. Bush and Republican legislators stepped in, passing a last minute bill on Palm Sunday of 2005 to reinsert Schiavo’s tube, but the U.S. Supreme Court refused to hear the case and a Florida judge refused to give the federal bill jurisdiction. Schiavo died 14 days after her tube was removed.

“Permission to starve and dehydrate Terri to death was granted on hearsay evidence,” write the Schindler’s at the website for their non-profit, the Terri Schiavo Life & Hope Network, an organization founded after Schiavo’s death and which is “dedicated to helping persons with disabilities and the incapacitated who are in or potentially facing life-threatening situations.” Michael Schiavo claimed that his wife wouldn’t want to live like that and had told him so.

In both the Cruzan and Schiavo cases, the public conversation was about who could speak for these young women. The first court case to raise this question–and to draw the attention of the Catholic Church–was that of Karen Ann Quinlan who collapsed after drinking and taking Valium at a party. She was resuscitated by paramedics and placed on a respirator and feeding tube. After four months, her family requested the respirator be removed but the Catholic hospital where she was being cared for, St. Clare’s in New Jersey, refused. In 1976 the court decided on her parent’s behalf but when the respirator was removed, Quinlan continued breathing. She survived on a feeding tube for another nine years, dying of pneumonia in 1985.

By the time the Cruzan case came around to the courts, Catholic leaders were better prepared. They filed an amicus brief against Cruzan’s parents that urged “the law should establish a strong presumption in favor of” feeding tubes because “food and water are necessities of life for all human beings, and can generally be provided without the risks and burdens of more aggressive means of sustaining life.” After filing the brief, Richard Doerflinger of the USCCB, told reporters that the Church strongly urged the court to not “constitutionalize” the right to die, as the right to abortion had been constitutionalized sixteen years earlier in Roe v. Wade, leaving ‘no room for the Catholic point of view.’” ( from William H. Colby, lawyer for the Cruzan family, writes in Unplugged: Reclaiming the Right to Die in America” p 171.)

The 2005 death of Terri Schiavo (and not incidentally, the legalization of Death with Dignity in Washington state in 2008 and in Montana on the eve of 2009) caused the USCCB to rewrite the Ethical and Religious Directives in 2009 to categorize feeding tubes, even though in a hospital setting they are surgically inserted, as comfort care and not a medical procedure. Which now means that in all 629 Catholic hospitals, the decision is now up to hospital staff, not the patient, or their family.

Article 58 of the directives now reads:

In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.

There are some 200,000 PVS patients in the U.S. at any given time. They’re not all women.

Yet, why were all three highly publicized cases about feeding tubes about women? Young, childless women? At Catholic hospitals?

It’s a multi-part question with multiple answers. But for the sake of my fifteen minutes I’ll stick to two: the first is a political lesson, the second is a fairy tale.

The Catholic Church understands far better than patients’ rights advocates do how religion, gender and sexuality work in society. If the debate about health care were focused on men’s bodies, the Church understands there would be a resounding call to make their hospitals subject to legal and medical standards. But because it’s about women’s bodies, the public conversation on all sides gets confused over issues of shame, pain, inconvenience, autonomy, social responsibility and voice.

Even at the time of Terri Schiavo’s death, a vast majority of Americans polled said her tube should be removed. But public understanding of the power Catholic hospitals wield in health care is limited almost exclusively to reproductive rights. Even the “pro-life” platform is synonymous with the fight against abortion (and now contraception). It is to the Church’s benefit to have any conversation about health care–even removal of a feeding tube–be about women.

Now the fairy tale. A few years ago I went to see Bobby Schindler, Terri Schiavo’s brother, speak at the Pennsylvania Pro-Life Federation annual conference. He told the audience of about 300 attendees how easy it was to love his disabled sister. All he had to do was love her and he knew that she would need him and love him back. Ever since I’ve been haunted by this comment. Recently a friend and film scholar, Genevieve Yue, gave me a review, “Two Sleeping Beauties,” that she had written for Film Quarterly, (Spring 2012).

Yue writes, “The observer, while he may remain physically passive, exerts a form of control over the sleeping woman simply by watching her. In other words, the observer derives his power from his ability to look, as well as the woman’s inability to look back.”

I’m repurposing Yue, of course, and the plight of the “preborn” is still the Church’s primary obsession. But to a very old and very female-observant, sex-interested male hierarchy, who could be more vulnerable, or could possess more potential, or could need more saving than a not abled–or unspeaking or “off-kilter” or sleeping or intubated–young woman?